Good News

I collapsed on the couch in Abbie’s room at 9pm last night, and told Genevieve to wake me at 10.  The next thing I knew, it was morning.  I suppose two nights of very little sleep had caught up with me, and she is far too kind to wake me.  She did the entire night shift on her own!

Abbie seemed to be comfortable, and her, uh…production was beginning to look a little bit more normal.  The attending physician stopped by around 11 with the results of the stool cultures.  None of the top three suspects is the culprit.  It turns out that a bacteria called “Camphylobacter” is the cause of Abbie’s problems.  It lives in the bodies of chickens.  I only use chicken to make gelatin/stock for Abbie, so the source was apparent.

After about three days of infection with this bacteria, it doesn’t help much to give antibiotics, so Abbie will not be on any extra medications.  And, because it seemed she has turned the corner from her appearance, her temperature swings becoming smaller, and her stool looking better, they released us today!  I am typing at the cabin in the mountains!!

There was one critical element to Abbie’s discharge, which reiterated once again how the Lord watches over her.  Because this infection is food-related, we  cannot use any of the food we  brought with us, and need to use a special canned formula.  Because we are going to be here for a while, the hospital was scrambling to pull together enough of the formula for us.

I called my friend, Sue Searles (Luke’s mom) because she lives in Tacoma, and has been looking for a new team to help with Luke’s muscle tone.  After I spoke to Dr. A., the physiatrist, yesterday, I was so excited to tell Sue about this wonderful resource in her area.  I was thrilled when Sue said, “Oh – we have an appointment with her next week.”  Sue blenderizes Luke’s food, just like we do for Abbie, and has for years.  So, I was surprised when she told me that she’d begun stockpiling cases of the very formula Abbie needs, because her family is going on a cross-country trip this summer.

“Hey, I can just bring you a case!’ she offered.  I hated to have her drive the hour up the freeway, so I told her I’d try to have the hospital work it out.  When it seemed to become a big glitch today, I phoned Sue again, and told her that we could really use that case of formula.

Her answer surprised me yet again.  “You know, I just love that drive to Cle Elum.  Let me bring it up to you tomorrow!’  Now..you must know that this will be a 2.5 hour drive, each way, for Sue.  She is one of the busiest people I know, so this is no small effort for her.  What a generous, and critical, blessing she is giving us!

Would you say a special prayer for Sue and her family tonight, including her little miracle man, Luke?  And, would you keep praying for Abbie?  She is glad to be home, but still uncomfortable.  She doesn’t seem as sleepy, but now she seems to be experiencing more pain instead of sleeping through it.

She was happy to hear the voices of her cousins, Cooper (7) and Oscar (“four-and-a-half”, he would like you to know) last night.  Because she was in isolation, they couldn’t come into her room, and she was rolled onto her side looking away from the door when they arrived.  However, when she heard “Hi Abbie!” she turned her head as far as she could to see them….love that!  It was medicine for me to see my sister and her boys (and also a treat to chow down on yummy Vietnamese food they brought.)

In so many ways we were blessed through the challenge, and we are so thankful to be home.  Your prayers paved the way and carried us along….bless you for that!

Not the Vacation We’d Planned

Spring Break…ahhh, our family’s long-awaited time of refreshing and renewal in the mountains of Washington.  We flew overnight on 3/19, with Abbie sleeping all the way, a blessed first.  She always looks forward to laying in front of the fireplace, but by Saturday evening, her rosy cheeks told us we were overdoing it.  We turned it off (yep, it’s fake…but still enjoyable!), and thought nothing more about it after she seemed to cool down.

Sunday night I was up until 3:30 with her, managing her breathing.  But, when I finally put her to bed she was off oxygen and looked peaceful.  I was satisfied enough with her condition that I went snowboarding with the boys on Monday.  When we returned home I found that her fever was breaking through Motrin, and her heart rate was very high.  We’d been noticing that she’d been having a lot more dirty diapers in past few days, but they seemed normal otherwise.  Then….PPPP.UUUUU.   The odor changed significantly, and we thought we saw blood.

Looking at all this together we decided it was time to go the urgent care clinic in the small town nearby.  They did a blood draw and found that Abbie’s white count was over 23,000 (normal is around 7,000).  The P.A. felt that she was fighting a major infection, and that to receive proper care we needed to take her to Seattle Children’s, a 1.5 hour drive over the pass.

We were fortunate that both the weather and road were clear, and arrived at 11:30 pm.  She was admitted this morning, and the attending physician feels strongly that she has a bacterial infection in her gut, we just don’t know the type yet.  E. Coli, Shigella and Salmonella top the list of suspects.  We are awaiting culture results that should arrive tomorrow and will dictate the course of treatment, which varies widely for those three.  Given what she’s got brewing, she looks pretty good otherwise.  She is very sleepy, and we are keeping her discomfort under control with Tylenol.  Her respiratory system is thus far unaffected, praise God!

Genevieve, our precious Genevieve, is camping out here with me, while Ray returned to Cle Elum to be with the boys.  As the three of us drove through the darkness with Abbie last night, I was praying, and reminding myself that the insistent grace of God allows me to live without fear.  As we neared Seattle, I was deeply impressed that Abbie was being “sent” to this hospital — not because she needed care, but for a larger purpose.  Even in the darkest of times, a hint of God at work gives me a twinge of expectation and excitement.  I wondered what He was up to.

I think I already have the answer.  We were visited by a kind member of the hospital administration today, and when I mentioned my envy of their therapy pool, he responded by saying they are trying to really create a center of excellence for CP here, and have brought in a very talented woman from Denver Children’s to head up the project.  He said he would ask her to meet with me during our stay.

Just a few hours later, the doctor he had mentioned, a physiatrist, arrived at the room.  She spent a very long time talking about all the aspects we manage, strategies to try, and things to balance.  She also examined Abbie.  What a precious gift it was to gain new insight from a different strand of experience!  This has made this stay almost worth it. She mentioned how odd it is to have a girl who has experienced an injury profound enough to give Abbie such physical limitations while she still retains such cognitive abilities.  I agree that Abbie is a rare jewel!  I must admit that it did feel good to receive validation for all the hard work Abbie has done all these years. God is good…all the time!

Please, pray for our sweet girl:  to overcome whatever bug has taken up residence (immediate eviction is warranted!!), for her comfort, for a release from the hospital and recovery in time for her to enjoy a little bit more time in the mountains, and for a smooth trip home.  I am kind of dreading the long flight if we are still dealing with frequent, messy, stinky diapers.  We will not be well-liked in that cabin, that is for sure!

But most of all, pray with thanksgiving for God’s unceasing care, provision, and protection, and the incredible plan for Abbie that we see unfolding every day!

Neurodevelopmental Assessment

Abbie and I enjoyed a drive out to Waimanalo today, to see her neurodevelopmentalist, Linda Kane.  Abbie last saw Linda back in September, when she assigned a whole new program that centered around rhythmic exercises that we dubbed her “dances.”   Soon after beginning the new program, Abbie’s cognition (or perhaps just her expression of her cognition) shot through the roof.  So, we were excited to see Linda today, and have her see in living color all the changes we’ve experienced.

As expected, it was a wonderful visit!  I love getting black-and-white data to get a feel for how we are doing, especially when it is so positive.  For example, Linda measured Abbie’s visual reading comprehension to be 4.8, which means it equates to the eighth month of fourth grade.  Woo-hoo.  We felt that Abbie was ahead of her peers, but didn’t expect that she is over a whole year ahead!!

We had her do the following word problem for Linda:

If you have one dime and the ice cream costs 25 cents, how much more money do you need?

Out of three choices (5, 10 and 15 cents)  Abbie quickly chose 15 cents with both her arm and eyes.  The other great thing about working this problem, is that Linda got to observe Abbie tracking with her eyes.  We have been working on and waiting for that for SOOO long!

Her processing time has gotten much quicker, which we observed both in the academic areas, as well as moving her body on command. Plus, Linda just felt she look really, really great.  I had to agree that it wasn’t just the St. Patrick’s green making her look like an angel!

We came away with a broadened program, some great academic advice, and a sense that all of this has been worth it.  All the days of doing the program, all the times of getting back to it after we’d fallen away, all the days of reading, reading reading when we weren’t sure if she was grasping it.

On the summary worksheet that I had to prepare prior to the appointment, I only put one comment in the “Questions and Concerns” section:  “How to keep up with her!!!”

What a blessed challenge we have before us.  God is good!

He Sees

Abbie was our happy companion at Matt’s wrestling banquet last night.  Even though it was noisy with 300 people there, she did  not want to have the cough (and suctioning) she desperately needed to clear her airway.  She waited until we were on the way to the car to get it all out.  It’s interesting to me how in tune she is in social settings like the school meeting last Thursday, as well as the banquet.

After the banquet we went to pick Daddy up at the airport.  She always gets special pleasure of being out and about at night (read: after bedtime), and was especially happy to have her Dad home.

Her body is doing wonderfully now after about a week of intense interventions.  I noticed last week that it looked like she was getting a yeast infection, which told me that her overall body voltage was very, very low.  We were also noticing that it was difficult to get her lower legs and feet to stay warm.  Since this week was Spring Break at her school, I didn’t have to worry about her being too “sick” to go to school.   The quotation marks are because she didn’t actually get sick, but the markers of the changes in her body can sure look like it.  So, instead of being frustrated or worried, I just thought “Do what you know to do.”  Often I find it’s not that I don’t have answers, means, or methods, it’s that I’m not executing them faithfully.

Lots of mucous and extra sleep later, her legs are now staying toasty warm, her muscle tone is significantly lower, and she is using her voice all the time…seriously, all the time!!  It is so cute.

A friend sent me a YouTube link today to a video that certainly adjusted my perspective and refreshed my soul.  If you are a parent toiling in what feels like invisibility, this one’s for you!

The Invisible Woman

May we all find joy in our life’s work, whatever it may be, knowing that all is seen by the One who loves you most!

The Eyes Have It

We had a special visitor last week, who came bearing a beautiful bridge.  She didn’t lug steel girders up our front stairs, but she did carry some heavy-duty suitcases!  Kristine is a representative of Tobii, which makes communication devices.  She came to the house to trial a device with Abbie that allows her to make  choices by just looking at the computer screen.  How cool is technology??

I didn’t get any video of the trial, but here is a YouTube link that shows something similar to what Abbie did:

http://www.youtube.com/watch?v=2i9-0Rd_r-g&feature;=PlayList&p;=B0899285A6E6AC80&playnext;=1&playnext;_from=PL&index;=9

When Kristine first set the device in front of Abbie and told her to look at the screen, we didn’t get much response to the basic start-screen.  “Oh…duh!” said Kristine, switching to a different screen.  “Abbie, I need  you to find the puppies on the page, OK?”   Wham-o!  All she needed was the right motivation.  It was amazing, encouraging, and thrilling to watch!

We were blessed to have Abbie’s longtime speech therapist. Lisa,  here to watch, along with her husband who works at the company bringing this device into Hawaii.  At the end of the session, I was trying to contain my excitement, and remain rational and realistic.  These devices cost as much as a new economy car, so I asked, “How well does she need to be able to use it during a trial to qualify to receive her own device?”

Lisa said she thought Abbie did pretty well, and was surprised at how far she has come with control of her body.  “A year ago I would not even have thought an eye-gaze device was on the horizon for her.  She can definitely do this!!”  Hurrah for Abbie!

I suppose that trial underlines what we are seeing in general with Abbie these days.  She is gaining more and more control of her body as time passes, especially when it comes to doing things on command.  I mentioned her swallowing in the previous post, the device trial showed off her eye control, and today she shocked me with her arms.

Maria was here working with Abbie on the massage table, and I stepped into the other room to get some oils.  When I returned Maria said, “OK , Abbie, show Mummy how you can move your arm.”  Right away I saw her hand lift up and I cheered.  Maria gave me a look that said, “Shhhh…just wait.”  I kept encouraging Abbie and was excited when I could see daylight peeking under her elbow.  Again, I started rejoicing, and got the same look from Maria.  After a little more encouragement, Abbie’s arm suddenly shot up off the table into midair.  I was speechless.  She then moved it around for quite a while.    I am so excited for her when I see her body cooperating more easily, since she has long known WHAT she wants it to do, and is now figuring out HOW to make it happen.

She is also using her voice more and more.  As her school speech therapist was peeking in on Abbie last week she said, “You know, she is using her voice a lot.  Do you think we can use that for communication?  Can she do it to answer questions?”  At that time I said that her voice use was definitely volitional (on purpose and meaningful), but probably not at the point where she could do it on command.  I now think she is quickly approaching that point.

She accompanied the twins and I to a meeting at school last night.  Abbie used her voice to “comment” on what the speaker was saying at all the appropriate points…it was hilarious.  When we were tucking her into bed that night Matt said, “You know Mom, we pray for Abbie to be healed every day, but it’s been happening all along in tiny steps we can’t really see.  Look how much better she has already gotten!!’

We have been crying out to God intensely over these past weeks, mostly in praise, and the answers He has been providing humble us in their specificity, timing, and perfection.  We are utterly blessed!